Visit to Dr Hain and personal status update

To start things out, I started going backwards last March with my symptoms continually getting worse. I am currently on leave from work and made a trip to Chicago last June. Now on top of a diagnoses of MAV, he also rediagnosed me with bilateral meniere’s. I have been fighting the meniere’s diagnoses for several years, but I finally confirmed it myself a couple of weeks ago.

I love my music, and I have been noticing for the last couple of years that certain notes were getting harder to hear. I thought it was my car stereo, and kept trying to do things to put those notes back into my music. Well, I brought the CD’s inside and listened to them on my home stereo and they are still missing. Playing the graphics equalizer I was able to confirm that I have a distinct and significant hearing loss that peaks around 200 - 250 Hz.

Mix that with another test that several doctors have done to measure inner ear pressure, and I have meniere’s. I just never had rotational vertigo to make it official meniere’s.

Anyway, Dr Hain put me on effexor wich I am not having to big of a problem with side effects, but it isn’t doing much to prevent/reduce the frequency and severity of my dizzyspells. My good days are now better than what they were a couple of months ago, but now my bad days are worse. My GP and I are following his directions, but it is beggining to look like effexor isn’t the med for me. Next on the list is veripimil (sp?).

You know the worse problem with playing around with the meds is the time (months) it takes to go up in dosage and then wait to see if it works, if not, then there is more time while coming off of the med before you can start the next. In the meantime, I am stuck at home, not going to work, wishing I was at work. I am at the point now where I have have gone beyond thinking about disability, I am now looking into it. I am even beggining to get advice from work and the insurance companies to start filling out the paperwork.

It is just so frustrating that last fall I had a lot more good days than bad days, and now it is the other way around. I even considered myself one of the success stories. Now I am nowhere near being a successful story.

Any way, I haven’t posted in a while and thought I would update everyone.

Brian,

Good to hear for you, but wish you had better news. I empathize with everything you said. Trial and error of meds are far from easy. I took disability last year, and it was emotionally very difficult for me. I loved my job and worked so hard for my career, etc. I try to have hope that I’ll work again one day, but it is difficult to be optimistic with this disorder. We’ll get there, though.

Lisa

Lisa,

You are so right about how hard it is to be optomistic when you are feeling like this. Right now, my two biggest problems are very frequent falling and cognitive issues. As I am today, I am having to retype most sentances 3 times to correct syntax errors. By the time I get one sentance right, I have forgotten what I wanted to say in the next sentance. :evil: As it is, my wife is being very supportive of my current condition and keeps telling me that I will get past this current emotional stage. She pushes me to do things when I don’t want to leave the house which is a good thing, and she reminds me when I need rest to keep my symptoms at bay. She has been going to my doc appointments with me because I have a big tendancy to forget things, or not want to admit things. The one thing that I have been very adamat on while I am off work is maintianing my sleep schedule. It keeps annoying friends when I call it bed time, they keep pointing out that I am not working and don’t have to get up early. In return to them I have to point out that if I don’t go to bed about the same time I pay for it the next day with a nasty headache that is just not worth the late night.

Oh well, that’s about it for now. Thanks for the comment Lisa. :smiley:
Brian

Brian, I am sorry to see that you are worse. I have read many of your posts and thought you were on the upswing. I tried Effexor and it didnt do it for me either. I also tried Verapamil, which looking back may have helped slightly with the constant dizziness and anxiety but overall didn’t do enough even at the higher doses (300 mg) and I began to get some water retention issues. It was an easy side effect profile drug for me, maybe made me a little tired at times but not too bad. The disability issue is so tough. I have been able to fight it off but I am starting to get pressure from work because my in-office hours are not what they once were. One of my fears is that I may become more depressed without having work to keep me occupied. It is tough though when I am having a bad day to have the pressure of work also. Good luck and keep us posted. Ben

Geez Brian I am really sorry to hear about that. I know you were doing quite well with Klonopin and Depakote so this is quite a shock to me. Out of curiosity, did you ever in the past let an ENT or any doc do the EcoG test on your ears to test for miniere’s? Im just wondering if this is something that developed while you had MAV, or if it was something you always had, and went undiagnosed? And are they sure? Minerie’s is rare enough let alone Bilateral. I’d be curious to know about the above. I pray that you make a speedy recovery. What’s worse than being sick with this junk is being sick, GETTING WELL and feeling the goodness of that, and then getting sick and going through it all over again. I feel for you on that Brian. I pray it’s quick and easy!

Rich

Rich,

Yes, I have had two ENG’s with the same results barely survived the cal test in my right ear which was my original bad ear, and vomitted with my left ear, what was the good ear. I passed all the other parts of the tests. Dr Hain did say that it would be a good idea to have another one run in the very near future. The thing that confuses me is that I do have all of the symptoms of meniere’s except that I have never had a true rotational vertigo attack. The one thing that Dr Hain pointed out in all of my past testing was the inner ear pressure tests show that my inner ear pressure is out of whack which is very indicitive of hydrops, which the doctors argue about hydrops being a symptom of meniere’s, is actually meniere’s, or is totally unrelated. I have talked to 3 doctors that all think it is at least related to meniere’s. Dr. Hain thinks my frequent falling is due to later stages of meniere’s, and the other two doctors who have diagnosed me with meniere’s both thought that I was in the early stages because I have never had a rotational vertigo attack.

If it sounds like I am rambling and don’t have a point, it is becuase I am. :lol:

Brian

yeah it does sound all very confusing doesn’t it lol. I see you did the ENG as you said but you also has the EcoG, which is supposed to be more sensitive for miniere’s? My ENG tests were both normal as well as my EcoG, which was the basis for my diagnosis of MAV, BUT,…I once had a rotational vertigo episode that lasted 4 straight days lol. Try that one some time lol. But they say that was a labrynthitis attack. I immediately lost hearing in my right ear 2 years ago when it happened (due to a cloggged ear from a cold) and it never happened again. I was suspectful of minieres which is why I had the additional tests. I got dizzy during the ENG of course but never threw up. Maybe the throwing up indicates something for you there? Or perhaps it just means you are sensitive.

The point is, Dr. Hain does not believe that you developed miniere’s secondary to MAV right? He believes that you HAD miniere’s the entire way correct? There is a device that is supposed to help with minieres. I have to look it up again. You get ventilation tubes installed and then you get a device that is supposed to equalize the pressure. Have you heard of it?

Rich

— Begin quote from “Rich2008”

The point is, Dr. Hain does not believe that you developed miniere’s secondary to MAV right? He believes that you HAD miniere’s the entire way correct? There is a device that is supposed to help with minieres. I have to look it up again. You get ventilation tubes installed and then you get a device that is supposed to equalize the pressure. Have you heard of it?

Rich

— End quote

If I understand your question right, Dr Hain does believe that there is a relationship between meniere’s and MAV. The problem is that because MAV is such a new of a diagnosses that nobody has done anystudies to prove or disprove aa relationship. Did the MAV cause the meniere’s or the other way around? Personally I would say no. I have had a problem with headaches since I was a child, and as a young adult I even had a few mild dizzyspells, I just didn’t know what they were at the time. I do know that the headaches evolved into MAV and the menier’es symptoms started about the same time and triggered by the same extremely stressfull situation.

Brian

yeah basically, I just mean that did Dr. Hain think that you first had MAV, and then BECAUSE of the MAV, you now have developed Miniere’s? But it seems with your answer, that you had Miniere’s all along with the MAV and you just didn’t know it or were not diagnosed. My question is, if you had the miniere’s the whole time you had MAV, why do you think you were so much better for a while on just the klonopin and depakote, and only NOW are starting to have problems? I’m just thinking it’s odd that if you had it the whole way, why you would have gotten “better” to begin with, without addressing the miniere’s. I’m going to find out what the miniere’s device is for you, as quite a few people have found relief with it.

Rich

Brian,

Really sorry to hear things are not going well at the moment. The hearing loss is the pits. And as Rich put it, there’s nothing more frustrating than feeling well only to have this crap reappear again. I really hope you can find something to ease this fast and you don’t end up on the med merry-go-round for too long (like I have).

Best … Scott

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Brian,

Really sorry to hear things are not going well at the moment. The hearing loss is the pits. And as Rich put it, there’s nothing more frustrating than feeling well only to have this crap reappear again. I really hope you can find something to ease this fast and you don’t end up on the med merry-go-round for too long (like I have).

Best … Scott

— End quote

yeah no kidding. I personally have not had this happen to me to any appreciable degree, but I have been well for great stretches, and then had small relapses that put those feelings of “oh no, I can’t go through this again” back in me and it just scares the life out of me. It’s like any experience that we don’t know what to expect going into it, so we’re perhaps more relaxed the first time, but if, God help us, we have to go through it again, we know what to expect and it’s most definitely harder because we’ve “been there”, and remember the hardships from the first go around! So I most definitely feel the pain with you because again, that idea of “what would it be like to be sick again” is not all that difficult to project, but I’m sure it’s all the more difficult to put up with when you’re actually LIVING it, as you have to be dealing with at the moment. And for that, I wish you the speediest recovery humanly possible.

Also, if Scott doesn’t mind the link, the name of the device for miniere’s is the “Miniett” device and can be found at meniett.com/. Dr. Hain doesn’t seem overly impressed with it but some people claim it has worked. For the price of simply putting in some ventilation tubes (not overly risky and certainly worth a try. Certainly FAR less risky than shunt surgery) and giving the device a try, I say there’s not too much to lose in trying it. Some people have found relief, even those having drop attacks, and you aren’t even having those.

Rich